Dale had a car accident about eight years ago. It was his fault - probably caused by undiagnosed Lewy. He totalled a Mercedes and was taken to the emergency room of a fine local hospital. They didn't find the rotator cuff break that we eventually opted to have repaired but he was there for 24 hours. His shoulder had been pushed against the driver's car door. I would be dead if I had been a passenger because the impact was on that side.

Having been through that experience, I've thought often about what I would do if he were to fall out of bed (by climbing over the railings) and hurt himself. Would I want him back in that same emergency room? Because it was a rainy night, the emergency room was full and Dale was in bed in a hallway. I like the hospital ... but Dale is in stage 4 and I don't want him in a hospital for the rest of his life. Obviously, broken bones should be repaired but I have wondered what options we have.

Leone, he wouldn't be in the hospital for the rest of his life. In fact, most of the time, hospitals ship them out before they're ready just because of insurance/Medicare rules based on diagnosis. My father had brain surgery in Denver and they discharged him the next day.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Sun Feb 20, 2011 4:59 pm

JeanneG

Joined: Fri Dec 31, 2010 3:07 pmPosts: 1039Location: Minnesota

Re: Emergency Room and avoiding hospitals

Iâve just finished reading the book Improving Hospital Care for Persons with Dementia, by Nina M Silverstein and Katie Maslow. It confirmed my impression that hospitals and emergency rooms in particular are not well prepared and equipped to handle dementia patients. The book reports on several efforts to improve that dimension of hospital care and offers some models other hospital systems could build on. I think studies like these are a very hopeful sign that things may change â I just hope they change quickly enough to benefit the huge rise in this type of patient that can be expected as the baby boomers age.

But in the meantime, those of us in caregiver roles now face the old, inadequate models.

Our suburb has a new and very impressive hospital. It has won many awards and made one list of the best 100 hospitals in America. I had surgery there and know that they deserve those awards. It was the best hospital experience Iâve ever had. Coy was in that hospital later. It was clear that they had no clue that dementia patients might need a different approach and a different level of care. Coyâs stay was an awful experience for both of us.

When I mentioned this to Coyâs doctor she said that our suburb was fast-growing and largely populated with young families. That hospital rarely dealt with elderly people, let alone elderly patients with dementia. She suggested that Coy would be better served by a downtown hospital that routinely handles a broader range of patients. I wonât know if that is better until we try it (and I hope we never find out) but I am changing Coyâs preference on our med papers.

After reading the book and thinking about our experiences, here are my conclusions:

1. If there is a choice, pick an ER or hospital that has experience (and ideally a good reputation) in dealing with dementia patients.2. The book contained an intake form that could be used to help establish a baseline that the staff should be aware of in treating the dementia patient. I adopted it a bit for specific use for LBD and Iâve filled it out for Coy. It joined his medications chart and his brief medical history as documents that would be given to ambulance attendants and that go with us when we travel. I havenât used it yet, so I donât know if it will make any difference, but I figure it canât hurt.3. Plan to stay with the patient around the clock for the entire hospitalization period. I am going to have a family conference a little later this spring, and this will be one of the topics. All of our children should know this and be prepared to take a few shifts if the need arises again. They should know the basics of being their Dadâs advocate. The older grandchildren can be involved, too.4. Advocate to minimize the length of stay if at all possible. Determine what would be needed to continue the recovery at home (or long term care facility, etc) and ask the hospitalâs social worker and/or another family member to help arrange that.

I donât know how much these steps will make the next hospital experience (if there is one) better than the previous hospitalizations. I am just going to try them and hope.

Jeanne

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Sun Feb 20, 2011 5:24 pm

nandel8

Joined: Sat Jul 31, 2010 5:28 pmPosts: 317

Re: Emergency Room and avoiding hospitals

Del had neurosurgery last September. He was in four-point restraints and they wanted me to take him home. The next day he was still in restraints (no longer four-point) and they said he was better so I should take him home. But he needed two strong aides to walk him to the commode. The fight was on. I won. He went in on Monday for a day surgery and i brought him home on Friday. Sometimes they NEED to be in the hospital.

It was a nightmare of a time. Originally he was an admitted patient, but some pencil pusher changed him to outpatient observational, so if he had had to be discharged to a SNF, Medicare would not have even ponied up the first day. What a deal. You have to be soooo careful and keep all your bases covered. Hospitals can make more money on outpatient/observational (Medicare Part B) than inpatient (Medicare Part A). It sucks big time.

Smiles, Nan.

Sun Feb 20, 2011 5:27 pm

Julianne

Joined: Sun Aug 29, 2010 5:46 pmPosts: 610

Re: Emergency Room and avoiding hospitals

What daunting cautionary tales! I know that all the hospitals are at the mercy of the Medicare rules, but this is ridiculous. I hope if my mother every requires hospitalization, our little local hospital can handle her. I actually know most of the doctors and staff there, her own attending has privileges there, and I would like to think they would listen to me. Beyond that, who knows? It's just scary to think about.

Julianne

Sun Feb 20, 2011 6:34 pm

JeanneG

Joined: Fri Dec 31, 2010 3:07 pmPosts: 1039Location: Minnesota

Re: Emergency Room and avoiding hospitals

Oh, and the other document that always goes with us is his notarized health care directive.

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Sun Feb 20, 2011 7:06 pm

Leone

Joined: Wed Oct 28, 2009 11:53 amPosts: 969Location: Ocala, FL

Re: Emergency Room and avoiding hospitals

Thanks for the helpful comments. Our family has some hospital horror stories:

Ten years before my father's death, he was hospitalized for a heart condition. He kept writing notes saying, "Get me out of here!" We finally got the hospital to allow us to 'take him home to die.' Ten years later, he did.

Dale's father was 'brain dead' for four days before Dale finally threatened to sue in order to get him released from the machines. It was a Catholic hospital and turning off the machines was against their policy even though we had a DNR for him. That room filled with machines was making money for them.

I must admit I'm not anxious for Dale to need that sort of care. I also fear pneumonia. I hope we can avoid it.

It's been many years since we lived in an urban area where there was a choice of hospitals. It would seem prudent to find out what policies a hospital has regarding end of life care.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Sun Feb 20, 2011 11:28 pm

JeanneG

Joined: Fri Dec 31, 2010 3:07 pmPosts: 1039Location: Minnesota

Re: Emergency Room and avoiding hospitals

I'm interested in that, Pat. Who would I contact to discuss that at the hospitals available to us? What questions should I ask?

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Sun Feb 20, 2011 11:39 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Emergency Room and avoiding hospitals

The hospitals in our area and in AZ all ask if you have Advanced Directives and, if you do, they make copies of them and keep them in your file. The admitting clerk usually does this and that might be a good time to inquire whether directives are always honored. I think nowadays even Catholic-affiliated hospitals [at least here in the West] honor end-of-life requests and directives such as DNR. But it's a good idea to ask. It's been many years since I worked in a hospital [I've been a home health nurse since 1989] so I only know what I see from a patient's [or patient's wife's] perspective.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Mon Feb 21, 2011 1:42 am

JeanneG

Joined: Fri Dec 31, 2010 3:07 pmPosts: 1039Location: Minnesota

Re: Emergency Room and avoiding hospitals

Thanks Pat. But I'd want to know this before I got into an admissions situation. We have many hospitals to chose from. How could I find this out before need? Hospital Administration?

_________________Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Mon Feb 21, 2011 2:00 am

Leone

Joined: Wed Oct 28, 2009 11:53 amPosts: 969Location: Ocala, FL

Re: Emergency Room and avoiding hospitals

Good thinking from all of you.... Thanks. I'm going to start investigating. We have three major hospitals within five miles of us. I'm going to start asking some questions now.

This is Florida... so they are all familiar with elder care. I have visited friends in all three.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Mon Feb 21, 2011 9:35 am

katelu

Joined: Tue Dec 29, 2009 2:28 pmPosts: 464Location: Minnesota

Re: Emergency Room and avoiding hospitals

Now that we have Mom on palliative care, the ER isn't such a concern. Her doctor had us sign, in addition to her Directive, Do not resucitate, do not intubate and do not hospitalize orders. Doing this now helps the medical team get us through those emotion filled times when the ER or no ER decisions come up.

When Mom was home with me, I couldn't keep myself from calling 911, even though I knew Mom wanted me to let her go. It wasn't out of philosophy or how I view death or medical care. It was just that I panicked. Now, I look back on the two times this happened as opportunities God gave Mom to leave, but I wasn't ready so interfered.

I do live in a large city with some of the best hospitals around - even the original Mayo Clinic is within an hour of me. I have to say that the last hospital stay was one where it was obvious that the staff knew what they were doing with a dementia patient. First, the hospital has more single rooms than double. So they immediately put Mom in a private room without extra charges (Medicare liked that). They brought in a cot so that one of the family could be with Mom 24 hours a day. We even had Wi-fi that let us work, to some extent, from the hospital room. We were there to speak for Mom (because she can't) and to discuss anything related to Mom's wishes, including the medical directive. The social worker was officed on the floor and was always available to talk with us about SNF plans.

Mom's previous stay in another hospital was no where near as well handled. It really is important, if you have the opportunity, to ask a lot of questions before you need a hospital.

One other note about medical directives. Mom's palliative care doctor, when given Mom's directive, said that they were all pretty much alike. I suppose he was expecting some kind of boiler plate. His CNP read through it and said it was much more comprehensive than usual and "suggested" the doctor read it. If your medical directive was written specifically for you, rather than a form you filled out, be sure your medical team actually reads it. And verbally point out anything that you feel he/she should be aware of. It doesn't do much good if no one reads it or knows the individual views expressed in it.

All of my grandparents were taken care of in a small town hospital, three of them had dementia. Small town hospitals are a whole different story - limited resources, limited staffing with more general backgrounds, limited facilities and equipment. I think they do the best they can, but if you have access to stronger facilities, I'd suggest using them.

Kate

_________________Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]

Wed Feb 23, 2011 2:07 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Re: Emergency Room and avoiding hospitals

Quote:

When Mom was home with me, I couldn't keep myself from calling 911

Kate, I've done the same thing several times and later had some regrets. Not sure if it's just instinct [maternal/spouse] or my training as an RN but I can't help doing it. I even did it once when he was in a NH back in 2008! I picked up the phone and called 911 because I could tell he was septic and going into shock. No one else had picked up on it [this was a really impressive-looking but dreadful nursing home].

Took care of my father as he died of cancer and didn't ever call 911 but that was different, somehow, as he was clearly terminal. I don't see my husband as terminal and yet I know that 'saving him' isn't doing him a service, either. If something happens at the SNF and I'm not there they will surely call and ask me--that's what they do. I hope God gives me the strength and presence of mind to say 'no'. His DNR and directives are all signed and there. If I am on the scene, I'll probably wimp out.

_________________Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

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